(Thanks to Pinetree for providing her success story and personal recommendations. This blog was written by her and edited by me (Cort))
A success story is always a remarkable thing to hear. Pinetree still has chronic fatigue syndrome (ME/CFS), she’s not ‘normal’ or cured, but a single treatment has made a remarkable difference in her life.
A year ago, she was bedridden and needed help with just about everything; showering, cooking meals, shopping, tending to her hair, etc. Now her bed is for sleeping at night, she is able to care for herself, and is starting to look for a job. The brain fog, the headaches, the severe pain, the overwhelming post-exertional malaise, the depression are gone!
The really remarkable thing about Pinetree’s success is how simple, in the end, it was. After trying dozens of treatments, it took one substance which clicked physiologically with her and she was on her way.
Before she came down with ME/CFS Pinetree was an active person; surfing, playing tennis, going for bike rides and nice long walks on the beach. She was going to college part time and working full time doing hard physical labor, bending down, lifting things up, and carrying heavy boxes as a stocker at the Dollar Tree.
If there was a trigger, Pinetree believes it was either Epstein-Barr virus (EBV) infection and/or a series of car crashes. Tests showed she had very high levels of antibodies to EBV but they could not tell when she’d contracted it. If she contracted EBV recently, though, it could easily have triggered her ME/CFS. While children usually easily fight off an EBV infection, adolescent/adults have a much more difficult time fighting it off. The other possible incidents were two traumatic car crashes in which she walked away uninjured.
After she became ill Pinetree did not stint on treatments. She did her homework and tried many, many supplements. They included L-carnitine, Carnitine complex (L-carnitine fumurate, Acetyl-L-carnitine, Glycine propionyl L-carnitine, and Acetyl-L-carnitine taurinate), CoQ10 in the form of Ubidecarone, R-lipoic Acid with Bioenhanced na-RALA, Magnesium Glycinate, Magnesium Malate, B12 in the form of Adenocobalamin, D-ribose, Branched Chain Amino Acids, Liquid Vitamin D, Multivitamin with 26 vitamins and minerals including silicon, lycopene, lutein, boron, vanadium and nickel, Vitamin B complex, lypo-spheric B- complex, PQQ, Rhodiola Rosea, Milk Thistle, Potassium Citrate powder, ENANA NADH, Oat Straw, Avena Sativa, Lemon Balm, Zinc Picolinate, Chamomile extract capsules, Acai capsules, Hops, combination Methylb12/ Methyl Folate with p-5-p lozenges, Olive Leaf Extract capsules, Grape seed, Whey protein Powder, Pea Protein Powder, Valerian Root extract capsules, Cranberry extract capsules, Turmeric Extract Capsules, Poppy Seed Extract Capsules, Fish Oil, Flaxseed Oil, Vitamin B12 injections from a doctor, probiotics, Coconut Oil Capsules, MCT oil, Panthenine, Niacinamide, Vitamin B1 by itself, Vitamin B2 by itself, Vitamin B3 by itself.
The ONLY supplements that produced any major long-lasting improvements were B vitamins, PQQ (pyrroloquinoline quinone), Coq10, and CBD oil. All other supplements either had no effect, made her worse, or were not worth the money.
She was still housebound and occasionally bedbound, and suffered from headaches, severe fatigue, back pain, and un-refreshing sleep but she was better off than she had been.
Her current supplement regimen is Vitamin B1 (Thiamin) 500mg, Vitamin B2 (Riboflavin) 100mg, Niacinamide 300mg (non-flush niacin), PQQ (pyrroloquinoline quinone), Magnesium Malate 325mg, Fish oil 4/day, Flaxseed oil 2/day, Zinc Picolinate 50mg, Multivitamin from Costco, B-Complex from Costco (3 a day, all taken in the morning), probiotics, and CoQ10.
(See Pinetree’s Supplement Suggestions at the bottom)
The Difference Maker: Cannabidiol – CBD Oil
She’d known about cannabidiol or CBD Oil for years, but until recently it was too costly to try.
Many people have tried CBD oil but have not gotten the results Pinetree has. She believes some may have simply made some mistakes along the way which prevented them from getting an optimal benefit.
Pinetree’s ME/CFS CBD Oil Tips ‘N Tricks
CBD has different bioavailability rates. Bioavailability refers to the fraction of a substance that actually reaches your systemic circulation. That means that when you ingest, smoke, hold under the tongue (sublingual), or topically apply CBD, you are only getting a fraction of the CBD found in the product.
CBD Absorption rates:
- Orally (swallowing): roughly 5-20%
- Smoking/vaping: 40-90%
- Sublingual (under the tongue): 20-50% +
- Topically: unknown but transdermally, 70-90%.
As an example, if you take 10 mg of CBD oil, here are the amounts you will TRULY get with each method:
- Orally: 0.5 to 2 mg
- Smoking/vaping: 4-9 mg
- Sublingual: 2-5+ mg
- Transdermal topical: 7-9 mg.
Differences in the Endocannabinoid System
A person’s response to CBD oil depends in part on how their endocannabinoid systems respond to it. Some people’s endocannabinoid systems simply respond more efficiently to CBD oil (less oil is needed) than others. Plus, people who have never smoked weed nor taken CBD or THC may be less responsive at first as well.
It’s important to note that most people will not feel the true/full potential of the CBD immediately because it needs to be built up in the body – a process that can take anywhere from 2 days to 6 weeks.
To get better, longer lasting effects, take CBD oil every day. Remember that if stress on the body is sustained, then treatment needs to be sustained as well. This is especially true for people with chronic ailments such as chronic fatigue syndrome (ME/CFS).
Tolerance – It may be possible to develop a tolerance to CBD. That means you may not feel it as well as you did before with continued use. If you find that this is happening, use your CBD irregularly or discontinue use for an extended amount of time and this will help with tolerance.
Full Spectrum vs Isolated CBD Oil
As noted above, many more cannabinoids are present in marijuana and hemp than just THC and CBD. These cannabinoids work synergistically with each other and basically potentiate your CBD product so that it works better.
- Full Spectrum – Full spectrum means different things to different people, but it does mean that cannabinoids in addition to CBD (such as CBN, CBG, CBC, CBDA, CBDV, THCA, THCV) are present. By checking the potency lab results when buying full spectrum CBD products, you can tell what kind of cannabinoids and how many mg/ml of each is in your CBD product.
- CBD Isolate – means that your CBD product only has CBD in it. (Most isolates still do contain very trace amounts of THC, so be careful if you are getting drug tested. Make sure lab results prove a 0% THC content.)
- Using Sublingual CBD – If you take the sublingual route, Pinetree suggests that you hold it under your tongue for at least 5 minutes. All companies she knows say to hold it for 30 to 90 seconds but for her that is not enough time! She’s confident you will see a difference in holding it under your tongue longer. Her own personal, optimal time is 10-15 minutes for best absorption. You should experiment with the amount of time that’s best for you.
If you choose the sublingual route but find that you cannot hold it for longer than 1 minute, swish it around in your mouth. Your gums, cheeks, and other parts of the mouth can still absorb CBD. Fun fact: if your CBD product has coconut oil in it, coconut oil is an antibacterial which will help reduce bad breath!
Some people experience gastrointestinal distress with CBD products. If this is happening to you, do not be alarmed. Check your CBD product ingredients to see if there’s something in the product that could be causing it. Hemp seed oil, olive oil, and coconut oil are examples of carrier oils that can irritate the stomach. If you still have gastrointestinal stress with CBD, hold it in your mouth for the required time, then spit it out.
Be Safe – CBD is a drug. CBD may not work for everybody. Some people may be allergic to CBD or the carrier oil. CBD can have side effects. Even odd side effects can pop up at times. Discontinue use if you have side effects that are unbearable and consult your doctor.
BE CAREFUL AND BE AWARE. DO NOT TAKE MORE THAN 1,000MG CBD A DAY UNLESS YOU HAVE A DISEASE SUCH AS SCHIZOPHRENIA OR EPILEPSY. ALWAYS CONSULT YOUR DOCTOR.
Although there have been no (reported) fatal overdoses on CBD, and reports have confirmed doses of CBD up to 1,500 mg are effectively safe for humans, there have not been enough studies to prove it’s 100% safe in high doses for long periods.
- Take Extra Care When Smoking or Vaping CBD – Some CBD products can irritate the lining of the throat or irritate the lungs. Some have dangerous chemicals in them. Please educate yourself on vaping and smoking CBD.
- Research Your Brand – She’s heard scary stories and read scary articles about companies putting synthetic cannabinoids or synthetic chemicals into CBD vape and passing it off as natural.
Many CBD companies only test for potency. Because hemp is a known bio-accumulator, it has the ability to suck up toxins from the soil. If you want to be safe, check lab results for heavy metals and harsh solvents.
She uses 1 ml (which works out to about 20mg of available CBD) of CBD in the morning and 1 ml at night. Her body takes in about 40mg of CBD oil a day.
If you are using a CBD brand that works for you – but they do not test their products – she encourages you to reach out to those companies and gently encourage them to test their products. Those companies will receive more widespread attention and consumers will be more apt to buy their CBD products with labs.
Try Other Brands if Necessary
If you are getting undesirable effects from your CBD, do not give up. Different CBD brands affect people differently. Some CBD oils are uplifting; others are sedating. Keep trying different brands until you find the brand you like the best. CBD oils are not created equally. Do not assume a CBD oil will work even if “you have the best quality CBD around because you bought it from a clinic and the person who sold it to you says it’s very high quality”.
CBD is still in its infancy and we as consumers can change the industry by making sure those products are safe for consumption.
Remember, CBD is not federally regulated, so any company can throw oil/tincture in a bottle, or throw liquid in a cartridge, or make a topical, and claim it is lab-tested and that it has the claimed amount of CBD.
Pinetree’s Tips for Choosing the Best Supplements
CBD oil provided Pinetree her big breakthrough, but she did get help from supplements and tried a lot of them. Check out her suggestions for getting the best use out of supplements.
1. Focus – If you’re going to try supplements, focus on your two biggest problems (e.g. sleep and pain), research the supplements that are helpful for those problems, and try them. Don’t try to attack everything at once.
2. Carefully read labels – Different companies, for example, produce different kinds of B-complex. Company A has vitamin B1, B2, B3, B5, B6, B9, B12 while company B adds PABA to the mix. What is PABA? It is technically a B vitamin not found in most B-complexes. PABA may hurt or benefit you and could make the difference between no improvement and great improvement.
3. Don’t give up – Pinetree tried five different B-complexes from five different companies before she found one that worked for her. Even though technically she was buying the same kind of vitamin, the brand made a difference, perhaps because of its quality.
Pinetree reported that only two vitamin companies (Costco, Nature Made) come with the USP Seal which indicates that the product:
- Actually contains the ingredients in the declared potency and amounts listed on the label. Tests have shown this isn’t always true.
- Does not contain harmful levels of specified contaminants such a heavy metals (e.g., lead and mercury), microbes, pesticides, or other contaminants.
- Will break down and release into the body within a specified amount of time. USP Dietary Supplement Verification tests products against federally-recognized dissolution standards.
- Has been produced according to FDA current Good Manufacturing Practices using sanitary and well-controlled and documented procedures; i.e quality controls are in place.
Pinetree believes that low quality vitamins are a major reason why some people get negative reactions or don’t see any significant improvements with their vitamin supplements.
Be Willing to Experiment with Dosage – typical dosages listed in the Supplement Facts are dosages for HEALTHY people. If you’re deficient in a certain vitamin or mineral, or your body does not utilize a certain vitamin or mineral correctly, you may need 2 – 5 times the dosage listed on the bottle. As an example, she takes 3 vitamin B-complex pills a day. Taking 1 or 2 a day does nothing but taking 3 a day makes a whole world of difference; she sleeps better. She actually gets refreshing sleep now (!) and wakes up feeling like she’s ready for the day.
Of course, start low and go slow, and work your way up. Be aware of possible side effects.
- Next up – a deep dive into CBD Oil – types to take for pain, how to use it, strategies for best use
- Check out Health Rising’s Cannabis / Medical Marijuana resources including How to use Medical Marijuana Without Getting High by Donna Gregory Burch